Should we treat patients with myeloma with multidrug, multitransplant combinations with the goal of potentially curing a subset of patients, recognizing that the risk of adverse events and effect on quality of life will be substantial?
Do you believe that good nutrition and supplementation makes a huge difference in keeping Myeloma at bay longer than anything else?
Do you follow any particular physician or natural or holistic practitioners?
If so can you share with this info with me please.
I am a 6 year survivor of MM. Had stem cells 2014. Never attained remission allowed M protein was 3. My light chains are slowly rising every blood test. 101% now. I started Beta Glucan 1,3,D3 last month and the rise stopped. Ray
First and foremost, managing your multiple myeloma since 2014 is excellent.
Secondly, there is nothing magic about reaching complete remission aka an m-spike of 0. Yes, we all would like to be completely back to normal, no m-spike, no FLC’s out of the normal range.
But research has shown that MM survivors who do not reach CR can live just as long as MM survivors who do reach CR.
The issue is to balance the damage done by chemotherapy with the damage done by your MM. This is the cure vs. control debate. I will link Dr. Rajkumar’s essay below.
I believe that nutrition, supplement, lifestyle, etc. aid my controlling of my MM. Conventional MM oncology tries to cure MM. I think aggressive chemotherapy is too much toxicity for the average MM patient.
I don’t know what you mean when you say “allowed M protein was 3.” Does that mean that you achieve an m-spike of 3 with your induction chemotherapy and then had an ASCT? Do you know your unit of measurement? I think NZ uses a unit of measurement 10 times higher than the US. Therefore, I think your m-spike was .3 and therefore pretty low.
In response to your question about people I follow, yes, there are many who I have read and many books I have read about various therapies, issues, etc. For example, I read a book called Eat Right for your Blood Type. I eat a little learn red meat. You will see a Ted Talk given by a Dr. William Li in the nutrition guide linked below. This talk is the basis for much of my research and practice into nutrition for MM.
Yes, good nutrition, supplementation makes a huge difference in managing multiple myeloma for the following two reasons.
1) General nutrition is healthy, helps maintain normal BMI, is needed for healing in between rounds of chemotherapy. Not only immune function but issues such as kidney, bone, heart health.
2) Anti-MM nutrition and supplementation- specific foods and supplements (curcumin, resveratrol, others) have been shown to kill MM. This is a beneficial therapy before, during and after conventional therapies.
Let me know if you have any other questions.
Hang in there,
MM Cancer Coach
“Although not often openly acknowledged, “cure vs control” is the dominant philosophical difference behind many of the strategies, trials, and debates related to the management of myeloma. Should we treat patients with myeloma with multidrug, multitransplant combinations with the goal of potentially curing a subset of patients, recognizing that the risk of adverse events and effect on quality of life will be substantial?
Or should we address myeloma as a chronic incurable condition with the goal of disease control, using the least toxic regimens, emphasizing a balance between efficacy and quality of life, and reserving more aggressive therapy for later?
To be sure, if cure were known to be possible (with a reasonable probability) in myeloma, it would undoubtedly be the preferred therapeutic goal of most patients and physicians. But this is not the case.
Myeloma is generally not considered a curable disease; however, new definitions of cure have been suggested, including operational cure, which is defined as a sustained complete response (CR) for a prolonged period.1,2 Cure vs control is debated because the strategies currently being tested are not truly curative but rather are intended to maximize response rates in the hope that they will translate into an operational cure for a subset of patients…